When she was a child in the seventh grade, Mequon native Lexie Van Den Heuvel received the news she had celiac disease -- meaning gluten can damage her small intestine.
As the years went on, Van Den Heuvel began to notice the prices of the gluten free foods.
That, coupled with finding out the cost to test for celiac disease is high, led her to create Cutting Costs for Celiacs in 2013, a non-profit foundation for celiac-affected children in Wisconsin.
She was 14 years old at the time.
Van Den Heuvel was recently recognized for her work by the Vincent L. Hawkinson Foundation with a scholarship.
An early start
She started working on Cutting Costs for Celiacs the summer before her freshman year in high school. Van Den Heuvel said she started it because she didn’t know what else would help because “a lot of time social initiatives don’t get as much fundraising.”
Walking into a non-profit seminar at Marquette University at such a young age was an awe-inspiring experience. Van Den Heuvel said the first time she went, those from the university mainly addressed her parents.
“So nice you came along with your parents,” the staff would tell her.
“No, no, this is for me,” she’d reply.
Van Den Heuvel said Marquette Law helped her “a ton” with the legalities involved. She said her mother, who also had started her own company, helped a lot with the business aspect.
The Vincent L. Hawkinson Foundation awarded $24,000 in scholarships to nine students who have “established themselves as leaders for peace and social justice,” according to a news release.
Kimberly Sanberg, executive director at the Vincent L Hawkinson Foundation, said Van Den Heuvel stood out among the 133 applications because the work she is doing is very unique and the caliber of her application was impressive.
“She’s just a really remarkable person,” Sanberg said.
A special category for high school students was created last year, Sanberg added. Other categories awarded include undergraduates, graduates, and finalists.
An awards event was held in October for the winners; however, Van Den Heuvel said she was unable to attend due to having an exam that day.
Now a student at the University of Notre Dame in Indiana, Van Den Heuvel is working toward a degree in business as well as a potential supplementary major in Spanish. She said she chose that path to help her better run her foundation.
Preventing further problems
The foundation offers two programs. The first is a stipend program where every month a stipend for a local grocery store is given to those in need. Van Den Heuvel said she doesn’t have any direct relationships set up with any stores but typically people go to Woodman's or Meijer.
Originally, she just planned on offering the stipend program, but now a basket of gluten-free items is also offered from Children’s Hospital of Wisconsin, which also includes educational material and restaurant recommendations.
Van Den Heuvel said many families with members diagnosed with celiacs often just eat gluten anyway due to the cost of gluten-free food. She said that can cause expensive complications later in life.
“I wanted to start the non-profit to help children and make sure their issues were taken care of when the diagnosis was made,” she said.
The foundation has “definitely grown,” Van Den Heuvel said. About six families each month were given baskets over the last year. Prior to that, she said she’d given out about 20.
Cutting Costs for Celiacs can be reached through social media, the foundation website -- www.cuttingcostsforceliacs.com -- or directly at firstname.lastname@example.org.